Insights with Jack- Accidental Advocate

By Jack Reynolds, DPC Board Member and Patient Ambassador

February 2, 2015

As it is Ground Hog Day, I thought I would come out of my winter hole and blog once more.

March is only four weeks away and it will be time to visit Washington, D.C. and another chance for Dialysis Patient Citizen Ambassadors to bring our issues and concerns to our elected Congressional Representatives and Senators. Although I have made this journey many times since 2005, I am not a “natural” political advocate, and in fact, if not for a social worker, I may have never become a dialysis citizen at large at all.

My very first attempts at advocacy were on behalf of the National Space Society, which I am a life member, but kidney patient issues began to become a focus in the mid-1980’s when the Iowa Chronic Renal Disease Program which provided financial support for patients and families in the form of help for medications, hospital bills, and even transportation expenses, began to face cuts to the annual budget. This program was a great help to Iowa’s dialysis patients and frankly there were many months where I would not have had money to make it to the end of a month without the reimbursement check for the previous month’s expenses. The first face to face encounter I had with a political body came about in early 1985, when a fellow dialysis patient and I, along with the chairperson of the advisory committee that oversaw the Chronic Renal Program, spoke before a Health and Human Rights Budget Subcommittee at the Iowa Statehouse. Standing at the far end of a table that appeared to be about fifty feet in length and surrounded by perhaps a dozen very important people, we made our “pitch” to these gentlemen on the merits of the CRDP and how it would impact the kidney and dialysis patients of our state if funding were cut, or even worse terminated. Thankfully, our efforts were rewarded with no cuts to the program that year, but it was a yearly struggle to keep the program in the state budget and it was eventually terminated in the early 1990’s.

Faced with advocacy isolation with no real issues to engage myself, the idea of a solitary patient having any real impact in the renal world became a distant memory. In 2004, my social worker asked me if I would be interested in a new patient advocacy group that might even go as far as Washington, D.C. to bring patient concerns before lawmakers. I was extremely skeptical of any sort of organization that would make what I felt was an empty and misleading boast, but I submitted a member application in the mail to DaVita Patient Citizens. The following spring, I found myself on the first passenger jet that I had been on in thirty years headed to our nation’s capital to begin what has become a decade long journey in patient advocacy on behalf of dialysis and transplantation issues.

What an adventure that first trip to DC was. The weather turned out, at first, to be no different than what I had left in Iowa with a very chilly March wind howling through the city. To say our visit to Capitol Hill was hectic would not be overstating; with this appointment changed at the last minute or this or that person unavailable. To be fair, this first fly-in was conducted with one mass group of probably ten to fifteen people with sometimes almost the whole group in one office and at other times we would split up and go every which way with our leaders in touch by phone trying to keep our appointments coordinated and on time. Along with this organized confusion of neophyte lobbyists, was a film crew documenting our historic activities as we rambled through the halls of Congress.

All day I felt like a fish out of the ocean, but at the conclusion of the first fly-in of DPC history, another emotion began to take hold. I felt empowered, enriched, and confident that I might be able to make a difference after all in the outcome of issues that not only affected me as a kidney citizen, but touched the vast majority of the dialysis and transplant patients across the country. To say the least, much has changed since that advocacy trip ten years ago. Our organization changed its name to Dialysis Patient Citizens to better reflect our determination to represent all dialysis patients regardless of who provides their dialysis services, as well as advocating for issues that affect home dialysis and transplant patients.

Another positive change has been in the training and support given to fly-in participants so that they will be adequately prepared with the background and relevancy of any particular legislation or issues that they will be discussing with the elected officials or their staff. Although I am now an old campaigner,

I will be meeting for the first time this year, a new senator and representative who may know very little about kidney disease or dialysis, so I will be freshly challenged to tell my story, present the issues at hand, and to start once again to build a working relationship with the goal of making a better tomorrow for kidney citizens who, as we all know, require the helping hand of government money and of legislation that will make quality care a continued reality.

Want to empower yourself and advocate for that better tomorrow? Get involved in our organization and be a positive force for all kidney citizens.